Honestly, the last half of January went great. Little Buddy was happy and doing well as he trained for his upcoming race. He's in first place for the race's Charity Challenge and all was good an status quo. Although it was cold, we did a have a few nice days for him to enjoy a bike ride. Just our nice, usual routine days!
Our favorite track star! He made his 25 miles for Run Club and will now receive his kids marathon medal after his race!
Happy bike riding smiles the sunshine!
The trampoline has been a big hit!
If it's cold out, no worries. Pretending to drive the car is a big favorite still!
The other big thing this month was that Momma had to travel out of town to present research at Sanfilippo conference, so Little Buddy got lots of Daddy time!
Bye Momma! I'll miss you, but I am excited to have Daddy home with me for a few days!
Daddy got to do the Boosterthon run with him! They had so much fun!
Lots of outside playtime with Dad and Little Sister!
Excited for Momma to come home!
Reunited! Love this boy!
Unfortunately, as February started, so did Little Buddy's sleep issues. He went from his usual guaranteed 10-11 hours of sleep a night to an average of 5 hours. It's even worse because it happened so abruptly. One night he was fine, the next he wasn't. And the not fine has continued. We know sleep disturbances are normal for Sanfilippo kids as they progress, we were just expecting a more gradual change. We were not ready for this and Momma and Daddy are exhausted. What's worse is that his sleep issues each night have been difficult to deal with because there are a multitude of different issues. Sometimes he goes to bed fine and then he wakes up at 2:30 AM and is just awake and ready for the day. Sometimes he won't fall asleep until 12:30 AM. Sometimes it's both. Sometimes he wakes up crying or screaming like he is in pain. Sometimes he just gets out of bed and looks at books. Sometimes we can get him back to sleep, sometimes we can't. We are worried mostly with the screaming because he sounds like he is in pain but there is nothing we can see to be causing this pain, which makes us worry that he is having intracranial pressure. We have an appointment with neurology to see what is going on and what, if anything, we can do. But our poor boy has been a mess without sleep and so have we.
Just watching our sleepless boy on the monitor. It hurts my heart. He is tired and wants to sleep, but he can't
Height and Weight
Down to 68 pounds and staying strong at just over 53 inches.
Personality
Unfortunately, due to his sleep issues, we are starting to miss a little of Little Buddy's sparkle. With him being tired and agitated for unknown reasons, we are not getting the smiles and joy we are used to. It's heartbreaking to watch him be upset and not be able to help him. Hoping to we can get to the bottom of this and help restore his usual joy.
Developmental Changes
Obviously the loss of sleep has been a big change and we think it is causing issues in a lot of areas. Because he is tired, he is getting frustrated and agitated much easier. This means he won't attend to his OT or learning time work or do skills like feeding himself. We are hoping that these aren't permanent changes and that if we can get the sleep and potential pressure issues under control, he will start acting like his old self again.
Fun Tidbits
Someone made his First Reconciliation! One step closer to First Communion!
Not that he really has anything to confess. This is the picture of a pure, innocent heart.
So yes, it seems like we are heading into a difficult season of transition with SAnfilippo. We are hoping that maybe this is just a short-term issue that can resolve itself but we are preparing for the likelihood that our normal is changing and we need to adjust. Again, we will do everything in our power to make our boy comfortable and happy.
Always,
LBM
Little Buddy's Momma
